Stage 4 what's the chance of living beyond a couple of years? Really need some positive news.
Survival length: Stage 4 what's the chance of... - My Ovacome
Survival length
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Brum1966
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Hello, I would start by not asking that question. Ovarian doesn’t play by the general rules of cancer and each woman’s journey is different. On top of that, the stats you will get via google are generally out of date, often by years. They will scare you. But read some of the posts on this forum and you will see that we are not statistics. There are many here including myself who are five year survivors of stage 3 and 4. There are some who have done even better, with new treatments, it is possible to manage the disease. However, this group still loses members on a regular basis. No one has a crystal ball (not even your oncologist)... so if you can, put that question away and try to focus on today and tomorrow...it may be better than you think xx
Wow you have put that perfectly, it has given me hope too. Thank you.
Rught on
Exactly as Lyndy has written! Couldn’t have said it better! Don’t google.
Hi BrumIt looks like you have just joined this forum so maybe recently diagnosed? I do remember that time we all do its very scary and you cant see anything positive, only negative figures (often wrong) and the treatments ahead. But as Lyndy says you will come back to being you (maybe different) maybe stronger and more determined to enjoy every bit of the good times ahead that you can xx tell is a bit more about yourself if you feel happy to? We will be able to relate to your story. I was 49 when diagnosed with stge 3 and still going strong almost 7 years on, i have seen both children married and 3 grandchildren born, all things i was sure I wouldn’t see in the early days.
Sending positive hugs
Diane
Hi there, Brum. You just asked the six million dollar question. Best person to ask is your oncologist because your doctor knows you and has the specifics as to what is going on with your body. My doctor told me to stay off google. But that’s how I found my surgeon and Ovacome 😬 If you still want to input demographics and run some stats, message me for the site. Best wishes from Louisiana
Sashay
Thanks for your reply hun xx
Hi Brum1966It’s hard but you have to suppress your initial thoughts of “How long have I got” Yes it’s going to be shorter than we’d planned/hoped, so wasting our precious time worrying about what if, is not good for you. Try not to let the worst case scenarios keep wizzing round your head (hardest in the middle of the night I know). Face what you have to face and deal with it head on when you are told what is going to happen next, not for the weeks leading up to your next appointment (I know there will be tears overflowing occasionally). My initial consultation I was told by a CNS nurse, “we have women worse than you (stage 3/4) who are 15 years down the line and treatments are always improving” I’ve hung onto that. In between appointments enjoy life and your family. Smile and be positive, you don’t want to worry and stress yourself to an early grave! My mission is to make people comment on my permanent smile and positivity, whilst also slapping on the tinted moisturiser to encourage people to comment how well I kook, that drives me. I had 2 and a half wonderful care free years of NED after initial debulking surgery & chemo. Yes I came down to earth with a bang when it came back in February, but I faced the repeat chemo treatment head on, I’m not clear this time and the cancer progresses, slowly, but support and tablet treatment continues. My last appointment was October and the next scan is January, in between I will enjoy Christmas, my birthday (56) and New Year and push it to the back of my mind dealing with it again in the New Year. Initially when my daughters wedding was pushed back from Feb to Oct next year, I momentarily faltered asking my Oncologist will I be ok, obviously he wouldn’t commit. But then I decided what the heck, I’ll be there, I’ll be fine. In fact I’ll be able to have my hair done now instead of looking like GI Jane 😁. Positivity really is the best policy and not looking at Google Stats 🤨 This really is a wonderful Forum for help, advise and positivity. No one would every want to join under the circumstances but it really is a lovely place to have, welcome 😘 x
Lovely post. After 18 years free (that goes against statistics to start with) recurrence diagnosed this May. I havent asked how long tho of course when down you think about it. Looked on here and good advice dont google also so many great posts to help you when you are wobbling. Checkout Solange's post very uplifting x
Awesome and inspirational hun xx
Happy birthday hun xx
GI Jane 
I love the bright side. It is so hard to know we had less time then we counted on, so validating at the same time to have it acknowledged. It's true, but push it back, soldier on, don't count the days, make the days count.
Lovely post wise swords
Hi Brum. I’d echo the comments above. There’s no way of knowing how this disease will play out in our individual bodies. I don’t think it’s possible to get this diagnosis and not feel fear. But it’s important to get beyond this so that you can be part, with your doctors, of the team working to keep you well. And some women, including some on this forum, keep well for a very long time. At one point, I asked my oncologist whether the statistics of survival reflected any ‘normal’ distribution eg bell-shaped curve, and, if so, what sort of percentage were at the longer-lived end. She was adamant that there had been so much advance in the last few years, both in drug treatments and in surgical techniques, that past statistics just can’t be used to give any indication of current results. My personal approach is to welcome the treatment offered while also trying to get myself as healthy as possible - which includes anti-stress techniques, not something that comes naturally to me!
Sending you a big virtual hug
X
Stage 4 covers a huge range of spread of disease, symptoms experienced and organs possibly affected. I personally think the staging is largely unhelpful and should be reviewed. In any case Stage 2, 3 and 4 will generally be treated in exactly the same way with, unfortunately, the expectation that the disease might recur.
If it's any comfort mine is Stage 4 (apparently! ha ha) and I am 4 years post diagnosis, one recurrence under my belt but currently fit and well.
Thank you so much for your reply hun glad your OK, I have replied at length to chatt2 for a basic run through of where I am xx
im stage 4 i was diagnosed 4years ago ,it has not been easy but i have been on holiday twice and then spent a week in New York. when where you diagnosed,you have to think positive, and you can still enjoy life best wishes Sandraxx
Hi chatt2 thanks for replying, I had the actual diagnosis end of Feb this year stage4b after having pleural effusion vack end of last year hospitalised Jan this year and after a vats procedure they found where the cancer originated from. Had my first chemo 26th March and 30th March tested positive for covid and took a trip by ambulance on the 4th to hospital and stayed there for 9 days. I had 5 rounds of Carno and paclitaxel and on 3rd August had debulking surgery then was meant to have 3 more rounds. Had two rounds abd my cancer marker was down to 9 (1966 at start) I then had an endoscopic ultrasound and needle biopsy on my oesophagus junction which thankfully was just a cyst but at my next blood test cancer marker jumped to 195 so my treatment was stopped while I had a scan. At my oncologist appoint 2bd November he said there were shading on my liver but they can't tell if it's from the surgery, a small plyeral effusion on my right lung and some nodes so they giving me a break from treatment and I have to have another scan and bloods which should be end of jan or Feb (appoint not come yet) in the mean time I have to look out for symptoms abd get straight onto them if I have any. I am totally paranoid, I always portray I'm positive and have a big smile on my face, continually told I'm brave and strong but have days when I'm a littke down like today. I was doing so well, I know peripheral neuropathy is common but when I get up from sitting or in the morning from sleeping it takes about 15 to 20 steps for my legs to work properly and my big toe on my left foot feels like I've broken it lol my cbs nurse gives me the impression she is mega busy and I feel a nuisance I feel very unsupported except from my family who are awesome so I try not to get upset in front of them so as not to worry them. So sorry this us boringly long abd not unique as everyone elso is going through this I just want some hope abd a light at the end of the tunnel. Most days I'm good just on a bit of a downer today xx
Hi. Don’t worry about complaining here. The fact that we’ve all been through some version of your story doesn’t make it boring. Speaking for myself it’s comforting to know someone else has the same worries. I wish you all the best and hope you can focus on enjoying the holidays within the limits imposed by Covid.
Thank you so much for your words, I feel like I'm getting on everyone's nerves who ask me how I am lol xx
No you are not. We all have our moments and that is what is so good about this site. You will get lots of support and some wonderful positive insightful words that help and you think she's right and it gives you a helping hand to get through a despairing moment
Thankyou lovely xx
Hi BrumAs everyone else has said YOU are not a statistic. I was diagnosed stage 3C high grade 5 years ago and had one recurrence. I have been on a PARP inhibitor for 30 months and remain well.
I think knowledge is power and I have read everything to help me manage this disease. Ignore the statistics but do everything you can to help yourself.
I started by completely cleaning up my diet , I wasn’t a big meat eater anyway , but I am now largely plant based with a rare piece of fish but definitely no chicken or meat.
[Edited by moderator]
I’m convinced my diet is helping me as much as the PARP,
My Oncology nurse specialist always comments on my HB saying “ nobody on these drugs has a HB like this “
I am an ex Matron of an Intensive Care Unit so I absolutely have to know what’s going on. Don’t be passive in your treatment if you can help it. My advice would be to go into your treatment with an active interest and some knowledge of your condition.
I found some books which are extremely useful and I would recommend.
1. Anti- cancer a new way of life by Dr. David Servan- Schreiber.
He survived a very agggresive brain tumour for 20 years having been given a few months .
2. How not to die by Dr. Michael Gregor.
3. The cancer Whisperer by Sophie Sabbage.
An amazing book by a long term survivor of cancer that had spread everywhere including too many tumours on her brain to count. It is extremely uplifting and encouraging.
I’m sorry I don’t normally write such long winded posts but I hope this helps. Very good luck .
Kay
Thanks for your reply hun I will defo look into the books you mentioned. I am a go referral instructor, teach exercise classes for copd, cancer rehab (ironically) falls provention and group exercise for general public and I've been well and truly knocked off my purch xx
Well that’s great because you will go into treament with the advantage of being fit. It really does help. I was flying around the hospital until I got severe abdominal pain one morning at work. A colleague Colorectal Surgeon got me scanned there and then .
Suddenly went from Matron to Oncology patient in one day !! You just never know with this disease, it doesn’t discriminate. So get back on your perch , you are still the same person and you can do this !!
Kay
Love your reply hun, it's so nice I'm not on my own (wouldn't wish this on anyone though) I think as I was sailing through treatment I expected to have my last chemo October 19th which didn't happen due to this set back and I thought life can get back to normal for a while (thinking a couple of years at least before some kind of reoccurance) I just feel so on hold, miss my lovely long hair and how toned I looked and long to be able to get into my nice clothes (now a stone heavier and will not shift) lol xx
All those things will get better, don’t fret about it. You have to be kind to yourself as one of the Oncologists said to me. I know it’s all so daunting, I hated the loss of my hair, it really made me feel like a “cancer patient” more than anything else in my treatment. So when it starts to grow back it’s an amazing feeling ! Where are you in your treatment if you don’t mind me asking ?.
Hi! Are you BRCA positive or negative? My mother just started in PARP and you are having such amazing results!
Hello Kay,My wife was diagnosed with 3c likely 4 in nov 2019 . Chemo for 6 cycles followed by surgery and now on avastin/olaparib. since july 2020. BRCA negative . I am very interested in your switch to a plant based diet. To be able to make the switch is brilliant .May I ask if you can recommend any reading material or books I could buy as I would like to try this approach , kind regards Tim
Thanks to all who replied its very nice of you xx
The statistics are based off all data. A lot of advances have been made. Wishing you the very best!
OvacomeSupportPartnerMy Ovacome Team
Hello Brum1966
Thank you for your post. I'm sorry to hear that you're having a difficult time at the moment. We're here to support you, so please get in touch with our Support Team on 0800 008 7054 or 07503 682 311 or at support@ovacome.org.uk if we can help or if it would help to talk anything through.
I can see that you've had a lot of kind and thoughtful replies, which I hope you've found helpful. I'd like to thank everyone who has responded for not posting survival statistics, as we ask in our forum guidelines, which you can find at healthunlocked.com/ovacome/...
Best wishes
Julia
Ovacome Support
Thank you Julia for your lovely message is wonderful to be supported, I hate I'm feeling down today I'm generally a happy person but I was told to contact the hospital if I had any concerns about symptoms whilst they are doing this watch and wait I have called my cns nurse and left a message for them to call me back and have not had a call for 2 days now. So being able to converse with all these lovely people is a great tonic xx
Hi Brum, I am BRCA negative too. I started niraparib in July, but they reduced my dose because of my hemoglobin and blood counts being too low. I am stage 4 and I had many down days for sure. Don’t look far down the road, but just take one day at a time. I’ll keep you in my thoughts and prayers, Donna. 😊
Thankyou for those lovely kind words I hope your OK, big hugs to you xx
A big hug for you too. Take care, Donna
Everyone has such a unique journey after diagnosis but I would heartily concur with Lynda. She has put it so well, stay strong lovely lady and have a great Christmas.
Have a great Christmas also, hugs xx
I was diagnosed stage 3 found the cancer by accident I was in pain due to constipation. They actually thought I had diverticulosis then the scan showed the cancer. Had huge debulking surgery then 18 rounds of carbo/paxel. I was NED nearly 2 2/5 years then recurrence. The last 18 months or so have been up and down with becoming platinum resistant and Cayleyx no longer working I’m now taking a break and letting my body feel free of chemo at the moment. My bloods have always been really good and I have never looked sick. I’m just starting to feel good again even though my count is going up I have no cancer symptoms all discomfort is from the chemo. I’m on a lot of natural Chinese herbs my naturopath has me on and my oncologist has said that we will treat the symptoms not the count at the moment. I’m just sick and tired of feeling sick and tired because of chemo. It’s so nice to be feeling better by not having had any treatment for the last 6 weeks. Guess I’ll see what’s going to happen as I have another blood count at the end of January. Dr said if I still have no symptoms we’ll just wait and see. I totally understand how you feel as I’m feeling very frustrated right now as to what to do. I feel that I’m sick from the cure all the time and I just need a break and want to feel better.
Hi Calluv, my heart goes out to you hun, hopefully you will get to where you were a couple of years ago and feel more like you, I know that's what I want for myself. Glad your feeling a little better chemo is so brutal on the body it's really affected my legs. I hope you have a nice relaxing Christmas and please let me know how you get on after this break in treatment. Want to get anything off your chest then I'm a message away. Big hugs xx
Thanks so much for your reply. I really appreciate it. I guess we’ll see what happens in January in the meantime I’m just going to enjoy not having treatment and try to get good stuff into me. Hope you have a lovely Xmas and sending virtual hugs from Australia ❤️💕❤️
Well-Positivity is MOST the battle! I have a VERY aggressive, nasty diagnosis. I was told I had 6 months survival-9 -12 at the very outermost. Keep in mind, I asked the doctors to be frank- they did not just offer this information up- I requested it for purposes of end-of-life planning and so on. BUT, they were wrong! I am still here 2 years and 10 months out! No point in borrowing trouble. Keep the head up - doctors only know statistics but there are lots of outliers who beat the odds. Lots and lots!
Hi there, sorry to read about your situation. I would highly recommend Jane McLelland’s book “How to Starve Cancer Without Starving Yourself”. I would also speak to the Care Oncology Clinic in London, alongside any medical treatment offered. Wishing you all the best. Love from Mel xx 💕
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